Why this blog? Originally I wanted a place where people could receive updates on Emma's medical journey. There was a GoFundMe page that was set up for Emma's medical expenses on January 18, 2016. After a year of the account being active and the overwhelming support I wanted to close the site so that the people who already donated could support another person in need but still have a place to get updates on Emma. The more I thought about it I realized that anyone with a child who has a rare, common, or any disease or disorder whether diagnosed or undiagnosed has such an overwhelming journey. I've dealt with the good, bad, and very ugly aspects of our health care and insurance systems, traditional and homeopathic medicines, and school systems. I've learned some tricks of the trade, what works and doesn't work, and found amazing resources and support. My hope is that I can help others with their journeys as we swim through ours.

What does our journey look like so far? Six years ago when Emma was 8 years old she was first diagnosed with Celiac Disease. Through a completely gluten free diet she's been able to reverse the effects of gluten destroying her small intestine. Celiac Disease, although maintained now, was a huge part of our journey. We recieved the diagnosis at a time that there wasn't much information and not a lot of gf choices. I probably could do just a complete blog solely on our journey living with Celiac.

Two years ago Emma started showing signs of what we thought was an eating disorder. She had a lost her appetite and was rapidly losing weight. She was unfortunately misdiagnosed with Anorexia Nurvosa and spent 3 months in an adult eating disorder partial hospitalization program at only 12 years old. While in the eating disorder program other symptoms surfaced. Chronic headaches, muscle pain, memory loss, hallucinations, and unresponsive seizures to name a few of the new, escalating and terifying symptoms.

Where are we now? Emma was referred to a Neurologist and she has been diagnosed with a degenerative disease of the basal ganglia. She has calcifications in her brain. It is believed to be a rare genetic or rare mitochondrial disease. She's undergone countless tests. Brain scans, muscle biopsy, spinal tap, hundreds of blood tests, and genetic testings including the Whole Exome Sequencing. She sees a team of doctors both in our state and at John's Hopkins. Genetic research is in vital need of funding and we are hoping that one day soon we will have a diagnosis to what degenerative disease she has, and hopefully find a treatment. In the meantime her chronic pain and symptoms continue to worsen. We spent a month in the Fall of 2016 at Mayo Clinic's Pediatric Pain Rehabilitation Center to try and help with her quality of life and functioning with the pain.

I think the one thing that I gained most from our time at Mayo was that we weren't alone. Although we had different situations, we all gained invaluable strength from the support of the others in the program. We gained lifetime friendships with people who were also trying to keep their heads above water and just breathe...not less the strength to swim. Together we formed a current to help the water move faster and catch our breath. So whether you're reading updates on Emma or are dealing with something similar...thank you for being a part of Emma's journey and swimming with us.